Linda Styles

Linda Styles

Australia

Being the 4th child in a family of 5 children, I grew up knowing my older brother was different to other boys. Mum never let him play “rough” games, and there were the frequent trips to hospital. In the 60’s the only treatment was blood transfusions, which meant a day or over night in the hospital for my brother. In the mid 70’s they developed a test for females of families with a history of Heamophilia to detect the “markers” for the affected gene. My older sister was working at the RCH (Royal Childrens Hospital)at the time, and heard about the test. I was in my teens and thought it would be good to know. Had the test, though it was in the early stages of development, it showed I could be a carrier. When I started dating, and later married, my husband and I had many discussions about the chances of having a boy with Heamophilia, and decided we would deal with what ever we were blessed with. In 1983 I found we were pregnant. All went well through the pregnancy, and on December 2nd, after a long labour, we were blessed with a baby boy. I insisted he be tested, and after some discussion with a pediatrician, they did the blood test and told us he had Heamophilia. Life was pretty normal for the first 8 months, well as normal for a couple with a new born can be. We decided to visit my parents who lived in Footscray, Melbourne. Being that we lived in Colac, Victoria, it was a 2 hour drive. When we arrived at my parents, getting bub out of the car seat, he started to cry, not knowing why, I just thought he had a wet nappy, so I started to changed him. As I was moving his left leg, he cried louder. My mum said it wasn’t good, and we should take him to RCH knowing my brother had Heamophilia, I didn’t argue. We went to emergency and told the about my brother, and my test results, and my son’s results, and what was happening to my son. They checked him over, and contacted a member of the Heamotolgy unit. My son had his first bleed, in the hip joint. Sitting in the car seat for so long, had put stress on the joint and started a bleed. He was treated, with Factor VIII, admitted to the Heamotolgy ward for observation and any further treatment as needed. The next day we were introduced to Prof. Henry Ekert, and his staff. They went through all the information on Heamophilia and all the new advances in the treatment and care of a boy with the disorder. The one piece of advice I have always remembered from Prof. Ekert was my son was a boy with a bleeding disorder, let him be a boy and don’t wrap him in “cotton wool”. That was the start of many visits to the RCH for treatments, check ups, and information sessions. We moved to Sunshine to be closer to the hospital, after divorcing my husband. Long story, short . . I remarried, and along came son number 2 . . .2 for 2 . . .he has it as well . . .more trips to RCH . . for a a while I was attending the hospital, for one reason or another, aprox. once a fortnight. But as they grew up, and learnt how to look after themselves, trips to the hospital became less frequent. And now they are both fine, healthy young men. The oldest(33) got married last year, and lives in Canberra. No grandchildren yet, but hoping soon. The other son(25) is not sure what he wants to do. And just recently we have found out their 22 year old sister, my daughter, is, also a carrier. As we have seen in the past 50 + years, research has given our boys better and safer treatments, detection of the “carrier” gene, and who knows what the future will bring.

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Linda Styles

Australia

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